STORING TPN SUPPLIES & TRAVEL WITH TPN ADVICE + MY DYING WISH!

I hope you’ll watch this whole thing even though my face isn’t in this video. There’s some good tips in here! I talk about how I store my TPN supplies, acceptance when being on TPN, making travel easier, and lots of other stuff because I’m all ovah the place!!

I’ve got some video ideas and hope to record them in a few days so hopefully you’ll be seeing more content here soon.

14 Comments

It’s always good to hear from you! And your videos have such an unique style, even if the whole point is „only“ TPN and I cannot see your face.

ted smithon September 4, 2018 at 5:26 pm

Are you feeling OK? Your voice sounds really shaken like you’re upset n about to cry. I hope that’s. Of the case. I’m on TPN and a morphine pump. I now wear this huge wound pouch to cover my stoma and a fistula. My room looks like a hospital supply closet. Michelle from Warren

World of Veganon September 4, 2018 at 5:31 pm

xoxo

Just Sheilzon September 4, 2018 at 5:34 pm

Thanks for the insight on how you do this.

paulette Harrison September 4, 2018 at 5:39 pm

Thank you for sharing this way of life with TPN 💐💕xx

Michelle Reederon September 4, 2018 at 5:46 pm

You are still so amazing, Sara! I can hear in your voice how bad you feel, yet you still make the effort to post this much-needed info on to others! Hope you feel better soon! Much love, my fellow Crohnie! ❤️

Krisztina Kesselon September 4, 2018 at 5:47 pm

You really should make more videos. Maybe vlogs. It might make you some good money, you’re a good talker. ( you can talk to people who dont have any chronic desase. Ive been following you for years, although ive only ever been in a hospital when i was born) i wish you all the best, you are cool!:)

Beardy Joneson September 4, 2018 at 5:47 pm

I did this for 15 months thanks to the ‘Crohn’s Weight loss plan’ lol. Had a Hickman Catheter, so I had 2 lines/lumens. Every night for 10 hours. Fun times lol. Got my line out last November ’16. Glad those times are behind me. The TPN claimed my gallbladder, so that was no fun. Traded my line, colon, and gallbladder for an ileostomy.

Nice video. Good to see some light shed on us chronically ill folks. All the best from Pittsburgh.

ablinder94on September 4, 2018 at 5:48 pm

I’m so sorry that you have to go through this but you are so brave to share all your stories to help others. Never stop inspiring people because that is what you are amazing at!

John Carsonon September 4, 2018 at 5:51 pm

hey appreciate your effort in making awareness, i follow your vids in youtube since like 2 years ago, you give me strenght to keep going i think you are really strong person and your blog and pics are great, really good quality you are like a professional designer
, im a crohns patient and i understand stomach suffering, i hope you keep doing good, thanks!

Dorjian Bradshawon September 4, 2018 at 5:57 pm

I used to hate my tpn took me forever to learn to set it up

Sara Jane's Journeyon September 4, 2018 at 5:58 pm

You are so real, you are so strong, you are beautiful, thank you for inspiring me 💜🤗💜

Barb Cobbetton September 4, 2018 at 6:01 pm

Just wanted to thank you for putting all this out there I too have crohn’s and have been fighting with it since I was 18yrs old n now am 45yrs old I’ve had my lg colon removed and have been on n off tpn too many times to count but it seems things have changed cause when I was last on it I had to have the iv pole with the big pump n couldn’t leave the house or hospital. I recently found your channel and can so relate with everything you’ve gone thru and again just thank you for everything every video and tell all of the things you’ve gone thru, sometimes like you’ve said we feel alone in this and I’m sorry you had to go thru it all but it also helps to know im/your not alone so again thank you!